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Re: Chronic Illness Support Squad

Hello again! 

I was wondering if anyone had any tips or advice for me. I’m having an endoscopy in a couple of days, I am not sure exactly what to bring with me as my last one was quite a while ago.

 

Also, any tips for calming nerves, I’ve been a bit more anxious in the lead up about it than I thought I would be, I’m not exactly sure why, I’ve had a couple of endoscopys before.

 

thanks 🙂

 

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Re: Chronic Illness Support Squad

Hi @Dream_State! I had one a few years ago and I was pretty nervous too. They let my mum stay with me until I went to the area where I had the anaesthetic because I was so anxious. The anaesthesiologist said that he could give me medicine to make me feel more relaxed, but I don't know if he actually gave it to me. They also did an ECG on me because I was so nervous that my heart was being too fast.
Maybe you could ask if you could have a support person come into the day surgery unit with you. I had another surgery recently and they also let me read magazines in the anaesthetic bay and call my mum from there when the surgeon was running late. I think this helped with my nerves. My sister also gets anxious before operations and one time, the anaesthesiologist let her watch Ninjago on his phone and sing the theme song while she was receiving the anaesthetic. I think the staff can do a lot of things to help if you tell them that you're nervous.

In terms of what to bring, I would bring socks or slippers just in case. My hospital changed their policy between surgeries I had over the years. Originally, they gave me some things that looked like a shower cap but for my feet, but then for this year's surgeries, they told me that they don't have them any more and that I could wear my own socks or slippers. You may also need to bring any relevant scans. If they were done at the same hospital, the surgeon may be able to access them but I think I ended up bringing them for this year's surgeries just in case. I don't think you would need to bring anything else but I'm not sure. You could ask the hospital when they call to tell you the time you have to come in and when to fast (although once the surgeon told me this information in the pre-op appointment).

Good luck! I hope it all goes well. Heart

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Re: Chronic Illness Support Squad

Thank you @WheresMySquishy !!! I believe I have to have a parent with me because I’m still considered a minor. Although a lot of things have changed because of COVID19. 

This might sound strange but I think I’m most nervous in the lead up to it. I spent so much of my younger years in the same hospital so in a way being there is actually calming. Thank you for your suggestions, I’ll definitely take that into account. I think children’s hospitals in general are reasonably positive places with kind staff so hopefully on the day I’ll be fine.

thanks again! 😊

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Re: Chronic Illness Support Squad

Hey @Dream_State,

It is totally normal to be nervous. I really hope the suggestions are helpful - good luck with your surgery Heart Please let us know how you go.
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Re: Chronic Illness Support Squad

@Dream_State  I hope the staff treat you well and that everything turns out okay! I've personally had both good and bad experiences with children's hospitals, but the great thing about them is that they tend to provide a lot of entertainment and fun and I've found that they ask how you're feeling more often than other hospitals. The one my sister goes to has a traffic light system for assessing mood and they ask if there is anything they can do to make her feel better if she is in the red zone.
Maybe some of the staff will remember you too! I had some funny run-ins when I was in hospital recently. Smiley Happy

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Re: Chronic Illness Support Squad

Hi everyone! How do you guys explain your chronic illnesses to your friends? A lot of the people I know don't know anything about Chronic Fatigue so sometimes they think I'm just making stuff up Smiley Sad But I'm not complaining, I know CFS isn't as bad as a lot of illnesses. Love to everyone during this tough time, especially my fellow Chronic Illness buddies <3

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Re: Chronic Illness Support Squad

@TawnyOwl that's a hard one...

 

One option is using spoon theory, which you can find on Google.

 

Another one is just telling them your diagnosis, explaining it to them and if they still have a problem then so be it 

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Re: Chronic Illness Support Squad

Hello @TawnyOwl, I am sorry to hear that people think you are making stuff up when you try to explain your chronic illness to them. That must be a really difficult and uncomfortable situation to be in.

The spoon theory recommendation that @Tiny_leaf has made is quite interesting! I think another good way that you could explain your illness to your friends is to describe to them what having the illness means to you. You could also explain to them what a typical day is for you and how your day might be different from them. Adding the personal information might help them to understand it a bit better. But, I think it is important that you only share stuff that you feel comfortable talking about! I am sure that your experience of living with a chronic illness is quite personal and I would not want you feeling uncomfortable sharing these personal details! I hope this has helped Heart
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Re: Chronic Illness Support Squad

Hi @TawnyOwl! I think that explaining an illness to people can be really tough. I am still learning how to explain my health problems to other people myself, which isn't easy because there is a lot I still don't understand or know about them. What a lot of people don't know is that there is a lot of heterogeneity or difference in terms of how people experience illness and between different kinds of chronic illness. Some people have only a mild form of the illness, while other people have more severe symptoms. Some people have symptoms every day, while some people experience 'events' every so often with no symptoms in between. For me, spoon theory fits in with my eye problems really well because they can be made worse by doing everyday activities and as the day goes on, but it's hard to apply it to my kidney stone problems because they only cause problems for me when they drop into my ureter. People's symptoms and triggers can also be variable, so it can be hard for some people to understand them. With my sister, she can do some things with our mum but not when other people are watching. Her physio told us yesterday that sometimes people cannot walk in her clinic but they can walk around in the carpark. I think these points are really helpful to make when explaining chronic illness to people.
My parents still have trouble understanding my conditions despite being in the medical field. My specialists have tried to explain them to them, but they still don't fully understand them. Sometimes, the specialists use metaphors to explain things to them and one of them used to give us factsheets (your specialist may have some if you ask for them), point things out on models and show us photos they took during surgery. With some of my extended family, I've found that showing them resources helps, especially if they prefer written or more academic sources of information. I've also found some diagrams I've seen online to be helpful in understanding my conditions and explaining them to people. What kind of information people understand tends to depend on their personality and I find that the more I read about my conditions and reflect on my triggers, the easier it is to explain them to people. I think it also becomes easier to explain to people if you've had the condition for a long time and have discovered what helps and what triggers it. It is a very much an ongoing learning experience and there can be a lot of trial and error involved.
We also have an article with some tips about how to explain a chronic illness to people here.

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Re: Chronic Illness Support Squad

Thanks @WheresMySquishy , I really appreciate all these great ideas! And @Tiny_leaf I have heard of the spoon metaphor before but I wasn't too sure what it was until I looked it up the other day. That's a really cool way of explaining it to my friends and family, so thanks for telling me about it! Chronic illnesses are quite tricky, bc even with research and stuff often it's still hard for your friends and family to understand what it's like and why you can't do xyz anymore. Does anyone else have that?